Today, Annie worked on standing upright in PT with the help of some special braces at the gym that keep her knees straight.
Then Helenlyn, the staff orthotist, delivered her new AFOs! Annie is very happy with the rainbow tie dye.
New Braces!
Jun 20th, 2024 by ECM
The highs and lows of AFO fitting and meeting Spider-Man
Jun 19th, 2024 by ECM
Yesterday Annie was inconsolable in the morning as the staff orthotist, Miss Helenlyn, casted Annie’s legs in order to make new AFO braces. Can you see her tear-streaked face behind the shells?
Then in the afternoon, she was beyond thrilled to meet Spider-Man, who came to visit all the kids on the floor. She was the first one in the room when he arrived, came back to decorate the superhero mask and cape that he gave her, went back to show him her cape, then asked him to come see her room. Before yesterday, I’m almost positive she had no idea who he was, but he’s now her favorite superhero!
And I woke up this morning with agonizing back spasms. I must have tweaked it when I carried her to and from the potty at 1:30 am. As soon as she gets picked up for PT, I’m heading down to Walgreen’s for a heating pad and some ibruprofen.
Working hard at therapy, but not at meals
Jun 18th, 2024 by ECM
Annie was a busy girl yesterday–she was scheduled for four therapy sessions (including music therapy!), but she got to have an extra hour because one of the therapists had an opening and wanted to play with her! With five hours of therapy for Annie yesterday, you would have thought that it would have been a day of high productivity for me! Well, I walked to Target and spent $100 on various foods that require only a microwave or electric kettle to prepare, cold medicine, and vitamins (I’m fighting off a cold, though the prayers do seem to be working in that I haven’t totally succumbed), then talked to the doctor and nurse practitioner about Annie’s itchy stitches (she’s done with bacitracin and using hydrocortisone now) and attended her team conference, did some yoga stretches for my poor sore back (Annie seems light until you haul her around dozens of times a day), filled out the little girls’ paperwork for Heritage, and bought used copies of all the books Tommy will need for his modern history class next year (everything from Marx and Nietzche to Francis Schaeffer and Carl Trueman–those nerds are going to have a blast, and I might have to drop in occasionally!). In between her therapy sessions, Annie and I did another lesson of phonics and played Oh Snap! I had a brief phone date with a friend. I did our laundry. But I didn’t do any lesson planning or read any of the new stack of books Derek brought in for me on Sunday. I guess that’s still a productive day on floor 18 of Shirley Ryan AbilityLab!
She slept in until 5:30 this morning, which felt like a gift. All the hard work yesterday really must have worn her out–by dinnertime, she was weepy and fixating on a canker sore that the nurse practitioner couldn’t even see. All day yesterday, she refused to eat, so I’m really glad we left in the g-tube. The staff dietitian came to talk to me yesterday afternoon, and when I shared that I’m having some PTSD from all the feeding struggles of her early years with us, she gave me some woo-woo coping mechanisms and also was totally fine with me offering her the food and then filling her up with Nourish formula if she’s not eating enough by mouth.
I am trying her techniques this morning. Annie’s breakfast is bananas foster French toast and sausage links, something she should love. I gave her the option of eating her breakfast or just having the sausages and getting a tube feed of Nourish. She said she wanted the French toast. I made myself oatmeal. We took the following picture to show her sisters that she’s eating like a big girl. Then she changed her mind. I’m breathing deeply, holding my thumbs gently in my hands to tell my body it’s okay, looking slowly side-to-side to tell my hind brain that we are in a safe place and can calm down, and cheerfully giving her some time to think about her choices. I am reminding myself that I got over seven hours of sleep last night and that 5:30 CT is actually 6:30 ET, so I woke up this morning later than I would wake up at home. I am calm. I am serene. I am…praying for patience. Organic garbanzo bean and pomegrate juice-based g-tube formula, coming right up…
First Medical Team Conference
Jun 17th, 2024 by ECM
I got to talk to the whole floor of doctors and therapists to discuss Annie’s progress at the weekly team conference this morning. They’re happy with how she’s done thusfar, perhaps ahead of schedule, so we’re looking at an initial discharge date of July 12. (Ironically, Derek and all the kids are all booked that week and will be out of state, because we thought surely we would be gone longer, so if we do leave then, we will have to find an alternate way home!) Things may change with her progress, and we can adjust from there, but it’s good to have everyone on her case giving me the same tentative timeline now.
Father’s Day in Chicago
Jun 16th, 2024 by ECM
Derek and the kids drove over to spend the day with us, and oh, how glad we were to see everyone! We went to church at HTC, where Pastor Jon and Amy and two couples from our old small group were the only familiar faces after 14 years away. But it was so welcoming–several people introduced themselves, and total strangers are setting up a meal train for me. This is why we love this church so much.
We went out for brunch and then spent a couple hours at the Art Institute, then back to the room here for some games before Lou Malnati’s for dinner. Annie and I both got a little teary when they drove away, especially since we won’t see them again for two weeks, but it was a wonderful day together.
First Saturday at Shirley Ryan
Jun 15th, 2024 by ECM
Annie will usually only be scheduled to have two hours of therapy on Saturdays, but they told us they could fit her in for extra sessions if they had availability and we were interested. Obviously my reply was an emphatic YES! Today she was so excited to get to have two sessions of PT AND two sessions of OT! Since she’s not allowed to stand or walk outside of therapy time, we figure the more supervised core strengthening we can do, the better!
Annie has so much fun with her therapists that she DOESN’T want me coming along. So I took a walk out around the park part of Navy Pier during her first session and did “yoga for back pain” (strangely, there wasn’t a youtube video of “yoga for moms who are lifting 40 pound children in and out of bed and on and off the potty twenty times a day”) during her second session. Since she had me up overnight at 3:30 (had to go a very little), 5 (false alarm), and 6 (false alarm), today was a good day for sunshine (and four cups of tea!).
Annie was so excited to get to ride the special bike again today!
And then we had a few hours to kill before her last session of the day and decided to officially start kindergarten! For me, preschool is all the pre-reading and number sense skills (plus millions of read- and plenty of free play), and kindergarten is when we actually start learning how to read, using my trusty Ordinary Parent’s Guide to Teaching Reading, which taught the other four to read. Annie was thrilled to start phonics and feels like she’s getting to be such a big kid now.
A Fun Second Day of Therapy!
Jun 14th, 2024 by ECM
First of all, Hannah’s mattress was oh, so comfortable after a week of sleeping on benches too short, narrow, and or hard for the average adult human. Hallelujah! Annie did wake up at 12:30 am and 5, insisting on being taken to the bathroom. I had supplemented her measly meals with Nourish through her g-tube before bed, and I think I am going to cut her off from all liquids after dinner from here on out. So our day started at 5, but I was able to fall back asleep in the middle of the night, and I made her stay in bed quietly until 6, so we rested even if we weren’t sleeping.
The staff is really emphatic that they can take care of her while I get outside (probably noticing the dark circles under my eyes and my general air of overwhelmed stress) –so I went for a power walk along the lake during her first PT session and then went out and got fresh air and grabbed lunch during OT. Sunlight definitely helps my spirits.
Annie’s totally back to her own extroverted self. We just have her on tylenol three times a day, and she hasn’t complained about pain once all day. Her bubbly personality and the cute little bob haircut obviously have all the staff in love with her–the nurses and techs and interns stop by all the time to talk to her and see if we need anything. She even got an extra hour of PT today–when she’d finished her first session and was enjoying the special therapy bike, another PT was free for an hour and offered to take her around some more! Just time for a brief break, then group OT (painting activities) with another little girl who seemed to have as much personality as Annie. Then she hung out at the nurses’ station with the staff until lunch, ate lunch, and asked to go back out to chat with them (and type on their computers) until her last PT session of the day, when she got to use a standing wheelchair to get around!
We finally met with the social worker, who finally is going to send over a referral to Ronald McDonald House, where I may be able to stay overnight sometimes once Annie no longer needs me in the night. One other possibility is that our insurance may decide that hospitalization is no longer necessary for Annie, while the in-depth PT is, so we could get cut off from staying here at Shirley Ryan before we’re ready to be done. If that happens, we may both move over to Ronald McDonald to sleep and come over here for the same intensive therapies. On the one hand, it would be great–the food here is truly abysmal, and trying to get Annie to eat it is a huge struggle. But today she spent so much time hanging with the staff that I truly got a lot of lesson planning done for the high schoolers, and going back to entertaining her every moment when not in therapy sounds hard after my breaks today! We’ll be having team meetings with all the doctors and therapists every Monday at 11:30 AM where we will discus her progress and probable timeline.
Then in the late afternoon, the doctor gave us permission to spring Annie temporarily from the unit and go for a walk down along the river with Hannah! It was Annie’s first time outside in over a week, and she didn’t like all the loud traffic sounds but did enjoy getting some sunshine and seeing a couple of dogs being walked.
First day of therapy at Shirley Ryan
Jun 13th, 2024 by ECM
Last night was one of the most uncomfortable of my life…
I tried to pad this awful bench with hospital pillows and my yoga mat, but it didn’t work. I was so exhausted that I fell asleep shortly after Annie did, but then she woke up at 2:40 AM and asked me to take her to the bathroom, and I could not get comfortable enough to ever fall back asleep. Fortunately, an early morning facebook plea had Hannah (ever my Chicago hero!) bringing me a mattress this afternoon. We might have gotten some curious looks carrying it up from the parking garage, but I don’t care. I can’t wait to actually sleep in comfort tonight!
And Annie had her first OT session and two PT sessions! The therapists are all amazing here. Maddie, her head OT, wants to work a ton on trunk strength. Marley, her head PT, brought in the orthotics consultant right away, and we’re getting new braces made here ASAP. We’re going to try solid, non-hinged AFOs this time. She said how important it is to re-train her neural pathways so she has better gait patterns, so Annie can’t do any standing or walking on her own, even if she’s doing them in PT, until they give the go-ahead. It might be weeks. In the meantime, she gets to ride around in this cool prone cart that makes her look like she’s flying! Any time on her tummy is good for her core, so we’ll be traveling on this for a while!
Everyone on the staff is super friendly, and they all of course love Annie and make excuses to come talk to her because she gives out hugs to everyone. We found the playroom and picked up a toy and a book of puzzles, so we won’t get sick of my bag of tricks so quickly. I had some fresh air and sunshine with Hannah (and will not be going in to most of her therapy sessions at this point, so will have a chance to get out during those three hours most days), so here’s hoping that we both get good rest tonight.
Mailing Address Here
Jun 12th, 2024 by ECM
Annie Muller — Room 1807
355 E Erie St
Chicago, IL 60611
Mystery Timeline
Jun 12th, 2024 by ECM
I feel like everyone we talk to has a different timeframe for how long this inpatient rehab will last. The Riley doctor who referred us to Lurie told me 6-8 weeks, Dr Raskin initially told us 2-6 weeks, the Shirley Ryan PT doing her pre-op eval said that 6-8 was standard protocol after SDRs and that we wouldn’t even be standing or walking until week 2-3, the papers Dr Raskin’s nurse gave us yesterday said 6 weeks, which is what he said when he sent us off this morning, and then the floor doctor here doing Annie’s intake this afternoon said 2-3 weeks and expressed shock that we’d been told longer! I’d been planning on at least 6 weeks, with the worst case scenario of 8, so I don’t even know how to respond…